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Joy as an Alzheimer’s caregiver: How (and why) to look for it

5/17/2016

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-by Julie Fleming

Most of The Purple Sherpa's activity is now on Facebook. But something has been rattling around in my head, and I figured it was time to share.
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Self-care when there’s no time for self-care: What do you do when you feel like you've lost yourself in caregiving?

2/16/2016

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by - Julie Fleming
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Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind the Alzheimer’s Caregiver Minute website, Facebook page, and Facebook group. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-Alzheimer’s-caregiver stress and grief, even stronger because of my friends’ situation.

I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.


And I fantasized for a few couple of minutes during the drive about things I’d love to do.Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.

I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.
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Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with methat keeps the endless task list from feeling quite so smothering.
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Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than Caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of Alzheimer’s and other forms of dementia, loved ones quickly lose the ability to remind us. The disease becomes all-consuming for those who are diagnosed and those who care for them.

​Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click this button:

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Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers by Paula Spencer Scott (2014)

9/17/2015

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by - Julie Fleming
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​Surviving Alzheimer’s: Practical  Tips and Soul-Saving Wisdom for Caregivers
  appealed to me largely because I found it at a time when I wasn’t sure I would survive my father’s illness. It offers bite-sized tips and stories with support and instruction, making it easy to read in short bits of time. I also appreciated the emphasis on addressing stress and increasing quality of life for both the person with Alzheimer’s and those caring for him. The book teaches a problem-solving framework that will support you throughout your caregiving.
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What's your spot for renewal?

9/14/2015

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by - Julie Fleming
When you’re an Alzheimer’s caregiver, you may find it difficult to escape for rest and relaxation. But you’ve got to get refreshment on a regular basis, or you’ll wear yourself out. I spent time in the pool almost everyday because that restores me. Watch today’s video and discover where you can go to renew your energy and your perspective, and then go there.
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What's the next right step?

9/4/2015

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by - Julie Fleming
A late-night video discussing how to make decisions as an Alzheimer’s caregiver: ask yourself, what is the next right step?
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Feel the Feels.

8/31/2015

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by - Julie Fleming
Being an Alzheimer’s caregiver will mean experiencing many moments of sadness, loss, and grief. While it may seem easy (and even necessary) to ignore them to the extent that’s possible, pausing to acknowledge them will be far more helpful. Here’s why and how to do it.
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August 26th, 2016

8/26/2015

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by - Julie Fleming
Being an Alzheimer’s caregiver is demanding, and it’s easy to let your own self-care slide to the point that you begin to feel burned out. I’ve been there too. The good news is that it’s quite possible to recover from burnout. In today’s video, I’ll share three foundational steps that you can take to begin to recover your energy.
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    Author: Julie Fleming

    Julie has been providing love & care  for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011. And she's had to learn it all the hard way. Sound familiar?

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  • Home
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